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Foundations for self-directed support in Scotland

Personalisation and risk of harm

Figure 4.8:
Parents and children may have conflicting views about what may be safe or unsafe for a young person

Might
personalisation
through
self-directed support
pose risk of harm to children? The answer to that question is, of course, a complicated one. It depends...on the child, on the family, on the community, and getting the right 'balance' between risk of harm and choice and control. Some areas of tension in that delicate balance are that:

Children and parents may have different views about what might be unsafe or, indeed, 'beneficial' for a child.

Most parents act in the best interests of children, but some, sometimes, do not. This could be for a range of reasons (e.g. mental health problems, physical illness). These kinds of difficulties, as well as problems such as unemployment and poverty, may compromise a parent's ability to, for example, take responsibility for making decisions about how to spend an
individual budget
to support their child.

It is sometimes hard to separate out what is 'good' for a family and what is 'good' for a child. Supporting a child has potential benefits for the whole family, but there is a risk that a child's individual needs could become submerged when the family is the main focus for support - especially if different family members have conflicting needs.

And of course when we are thinking about risk, we also have to think about the risks of keeping the
status quo
- of not enabling people to benefit from taking greater control of and choice over their decision-making.

The next activity explores the question of risk of harm from the perspective of family members and paid carers, and asks how we can minimise the potential for harm.

Activity 4.5 Responding to risk of harm to children and young people

(30 minutes)

This activity provides an opportunity to consider how families and service providers, such as personal assistants, can respond to the potential for risk of harm when personalised services, such as self-directed support, are being discussed and provided. First, you will hear the parents of a young man, Cameron, who has autism, discussing questions about risk. Then you will hear one of Cameron's personal assistants, Kayleigh, who works for the organisation, Enable, explaining her role with Cameron in relation to risk assessment and management. After you have listened to the podcasts use your
learning log [Tip: hold Ctrl and click a link to open it in a new tab. (Hide tip)]
to answer the following questions:

What do Cameron's parents and his personal assistant have to say about responding to risk of harm?

Do you think that personalisation through self-directed support increases or decreases the potential for risk of harm to children and young people?

Transcript: Mr and Mrs McKendrick

Betsy McKendrick

My name’s Betsy McKendrick. I live at Kirkcaldy in Fife, Scotland.

Duncan McKendrick

My name is Duncan McKendrick. I live in Kirkcaldy, Fife, in Scotland.

Betsy McKendrick

We have one son whose name is Cameron and he gets self-directed support. I think it’s important if people explain to Cameron what the risks could be. I mean I think he takes people very much at face value; he trusts everybody. So you have to sort of break it down and say who could you trust? Who’s a person that you could go to if you had a problem. But as long as you explain the why and the wherefore, Cameron’s happy with that. It’s when people don’t explain things that there are problems.

Duncan McKendrick

Yeah, so if you don’t explain something to Cameron, his mind takes over and he fills in the blanks with what he thinks.

Earlier you said about Cameron wanting to make his own choices, but you did say, Duncan, within limits. So what are those limits, do you think?

Duncan McKendrick

The limits are that you can’t spend your budget on drink, drugs, fast cars. As long as you’re spending the money on sensible things, which is why they have outcomes. So you have to stick to the outcomes. So Enable have to stick to whatever they do with Cameron, they have to fill in a form at the end of every visit saying what the outcomes were in relation to that particular visit.

So could you ever foresee a difficulty if Cameron’s outcome was I want to learn to drive a really fast car and drive it at 80 miles an hour around the roads.

He would do it.

Betsy McKendrick

If you don’t experience these things, if you’re not given the opportunity to experience these things and make your own mind up, how are you going to make decisions?

So are there any risks that would be unacceptable?

Well, Cameron’s latest idea is that he would go on holiday to Rome on his own. Seeing as he’s not even been on a bus on his own, I think travelling to Rome and back might be a wee bit of a slight problem.

Or a very long term goal.

Betsy McKendrick

Absolutely.

Duncan McKendrick

Yeah.

There might be steps along the way.

Betsy McKendrick

Yeah, absolutely.

is it possible to plan to take the small steps with that goal in mind and does that help the planning of how the budget’s spent and the activities that are done?

Duncan McKendrick

Yeah, we talk through the plan with Cameron and basically we just leave out the bits where he wants to go to India or diamond mines or, we scale it down so instead of going to Africa to a diamond mine, we take him to Leadhills, which is also gold panning and he did find tiny flakes of gold. So he sees that as he got what he wanted, but didn’t have to go to Africa.

Transcript: Kayleigh

Kayleigh Nesbit

My name’s Kayleigh Nesbit and I’m a support worker for Cameron

How do you keep your eye on any risks that you think might be around?

Kayleigh Nesbit

We’re constantly looking around the situation. We plan overly before we go out for anything, so if it’s a new activity we will go to the area beforehand and fill in all the risk assessments and thenit’s just constantly on the spot risk assessments. What we will do from there is when we’re in the situation just constantly observing and sometimes you do have to change things. Sometimes we can’t follow the risk assessment because it’s virtually impossible and in that case we have to just on the spot make decisions and then when we come home we’ll change the risk assessments, fill in the paperwork and let everybody know exactly why we’ve changed it, what we’ve changed and how it affected the outcome.

So what if Cameron wanted to do something that you thought was too risky; how would you manage a situation like that?

Kayleigh Nesbit

We would do everything we can to allow an activity to happen if that’s what somebody wants. making sure we’ve got something that might mean putting an extra support worker So we’ll sometimes have shifts where it’ll be two members of staff that will allow a little bit more risk and if it’s something like an activity where the support worker needs to be doing it with Cameron you’ll have two. So you’ll have one that’s standing back and not taking part who’s purely observing and then you’ll have one that’ll be doing it with him so he’s got that person next to him that he can rely on.

Discussion

You have heard Cameron's parents and Kayleigh speaking about a number of ways of minimising possible risk. His mother, Betsy McKendrick refers to the importance of discussing possible risks with Cameron so that he can identify hazards for himself and understand the reasons for minimising some kinds of risks. However, his parents also emphasise the importance of Cameron having control over his life and, sometimes, of experiencing potentially risky situations so that he learns how to respond to danger. Assessing and managing risk is central to Kayleigh's work with Cameron but she also stresses that Enable, the organisation that she works for, aims to do everything they can to allow Cameron to do the things that matter to him. Kayleigh's work with Cameron, and the family's decision making about risk, is informed by an outcomes based approach (
Section 3
).

Cameron's agreed outcomes provide a framework for identifying and managing risk, but, as Kayleigh explains, it is also important for the support provided to be as flexible and as responsive to changing circumstances as possible. In Control has argued that personalisation initiatives such as self-directed support can minimise the risk of harm and maximise opportunities for children and families to lead active, enjoyable and exciting lives. In Control suggests that:

Self-directed support promotes participation and visibility in communities: this helps to protect children against harm, and means that communities play an increasing role in safeguarding their children.

Drawing on the '
real wealth
' (or
assets
: see
Section 2
) of children and people close to them enables the development of a
solution-focused
approach to risk that meets the needs of the child as an individual.

Vetting (e.g. of
personal assistant
s) and oversight of support arrangements for children (e.g. by social workers, nurses, teachers) are necessary elements of a comprehensive and positive approach to keeping children safe.

(Crosby, 2010, p.9)

There is always likely to be tension between harm and benefit in any course of action we take. The difficult task for those involved in health, education, social care and other services, as users and/or providers of services, is finding the right balance between the two. This involves thinking about ways of reducing the likelihood of harm while not disproportionately impacting on personal choice. This is sometimes described as 'proportionality': weighing up the potential outcomes in terms of harms and benefits is a feature of many decisions. Practitioners are required to adhere to codes of practice in this respect. For example, social service workers are required to:

Promote the independence of service users while protecting them as far as possible from harm

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